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Pediatrics. 2020 Feb 5. pii: e20190673. doi: 10.1542/peds.2019-0673. [Epub ahead of print]

Health System Research Priorities for Children and Youth With Special Health Care Needs.

Author information

1
Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin; rcoller@pediatrics.wisc.edu.
2
Division of General Pediatrics, Harvard Medical School, Harvard University and Boston Children's Hospital, Boston, Massachusetts.
3
Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, New York.
4
Department of Pediatrics, Harvard Medical School, Harvard University and Division of General Academic Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
5
Department of Health Systems Science, Kaiser Permanente School of Medicine, Los Angeles, California.
6
Departments of Pediatrics and Health Policy and Management, University of California, Los Angeles, Los Angeles, California.
7
RAND Health, RAND Corporation, Los Angeles, California.
8
MassGeneral Hospital for Children, Boston, Massachusetts.
9
Family Voices, Albuquerque, New Mexico.
10
Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin.
11
Department of Pediatrics, School of Medicine, University of Colorado, Aurora, Colorado; and.
12
Department of Pediatrics, David Geffen School of Medicine, Children's Discovery and Innovation Institute, Mattel Children's Hospital, University of California, Los Angeles, Los Angeles, California.

Abstract

OBJECTIVES:

In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach.

METHODS:

Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains.

RESULTS:

The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized.

CONCLUSIONS:

High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

PMID:
32024751
DOI:
10.1542/peds.2019-0673

Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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